Sunday, 26 August 2012

Sleepy echoes of carnival and clubbing

BLURGH the last few days i've been completely shattered! When i'm more lethargic than normal there's a whole lotta things I look out for to determine the cause, but this time i'm completely clueless! It's a pain, because I just dont know how to fix it. I've had massive sleeps, eating loads, not sciving on meds, but it's a mystery. All I can think of is that it might be my liver being boring and eating up all my energy, but it's never usually this devilishly hungry.

I had an echo the other day, to check my heart. I think my gastro/ endoscopy doc wanted it checked because he said if I start bleeding again, it'll be from some other place inside (he seemed to know where, mr Psychic Doc). They'll then have to do a different procedure (ie not banding the varicies), and for that will need to know how my heart and veins etc are looking. He didn't go into much detail, but it seemed a little more serious than a simple endoscopy and tying a rubber band around bleeding blood-vessels in the food pipe. Eek! I hope I won't need to find out more about this enigma, and will get my new liver before things turn even more dire...! But my heart is fine, which is good to know! That day however, my mood was not, as the silly appointment was at 9 o'clock. That day felt so long! I would think it was tea time, but it was midday. I wanted dinner, but it was like 3. It was like some annoying eternal day. I suppose this is the real world, as opposed to my sleepy nocturnal world where the majority of it is in darkness. Made a change, and actually, despite that mini-rant, quite a nice one...!

It's been CARNIVAL weekend. Yes, Notting Hill Carnival is fantastic. I, however, spent it in my garden with my book, my cat, haribo, and ginger beer, listening to the neighbours and the distant boom of sound systems and hooting horns and police helicopters. I've had some fantastic carnivals (free rum punch!), but this year I gave it a miss. Too sleepy and didn't want to get elbowed in the spleen. Yoww. Tomorrow I may venture out to the food stalls, pick up some plantain and a coconut to drink, but i'll see. (Look at how cute my Sky cat is!)

Also made a discovery! The last few months i've thought my nails looked even more clubbed (ie rounded and bulgy). Clubbing is tres common in CF, but they were never this big and nobbly! So, my new discovery is that nails can also become clubbed with liver cirrhosis - CF or no CF! I'm now hoping post transplant they'll return back to their normal only slightly clubbed selves. I know I know they're only nails, but they're getting tricky to paint haha. And kinda uglyyyy. Also noticed it's technically called 'digital clubbing', which sounds all high-tech and made me think i'm totes cool. Down with the kids YA KNOW. Fancy a forest rave? Do the robot? Maybe i'll paint them in neon colours and start a CF 'in' joke.


Wednesday, 22 August 2012

Cycling and Sirens

"Under the Westway... where I stood watching comets lonesome trails, shining up above, me the jet fuel it fell, down to earth where the money always comes first, and the sirens sing." 
- Blur, Under The Westway

I've been going cycling almost every evening. The days are too hot and busy, the night is just perfect. I've found a circuit that is almost completely car free - nearly 3 miles of weaving between estates, walkways under the Westway and quiet Notting Hill streets. The breeze is wonderfully cool, I can feel my puffers breathing in that night air, reaching new deep dark and dusty (gunky more like) depths. My leg muscles pump away, arm muscles reacting to every bump, even the ghost of my former six pack is stirring as my core tries to keep me upright, "remeeember meee" it croakily, fleetingly whispers in the wind.

It feels good. Even the wibbly wobbly jelly legs as I step (stumble) off is a reassuring sign that things are working - wasted lazy legs are waking. Hibernation is over suckers. One minute later they're fine. Tomorrow, they won't, as a faster, longer route awaits! I do a little cough, maybe a huff, shift a little blob. Not much to be honest. That's how I like it.

I like the distant roar of the Westway, the distant wail of the sirens on Ladbroke Grove, the distant rattle of the hammersmith and city line trains. I just like night time; stolen time away from burning heat and burning eyes. I'm only comfortable in jumpers, and jumpers in 30 degree heat is just bonkers. The darkness means I can also leave the house without a jot of make-up - I feel so liberated! Liberated and freeeee. My only restraint is to be back by 10 to watch Big Brother. And even that's on +1.

My red arrow route.

Friday, 17 August 2012

Redheads kicking butt

I'm not going to review every single film I see, but this one definitely deserves a mention! I went to see Brave with my mum (yeah, my mum. It's a very mummy/daughtery film), because being a redhead, how could I not. I want to support Disney Pixar's first ever female protagonist. First ever! I think it's ludicrous how Pixar, after what, at least 10 years(?) of fantastic films, have never had a female lead. Not very good. Big tut tuts. So, in this epic week of girl power (SPICE GIRLS FTW), Merida takes pride of place. And how perfect to have a lead who is a fiery, independent, beautiful redhead - about bloody time!

No way! I shoot arrows too!

What I was most moved by (yes moved, I was very emotional), was how unlike Disney princesses of yesteryear, Merida didn't need a prince. There was a happy ending, but that happy ending didn't revolve around her finding true love, getting married and all that traditional frankly outdated palaver. It was all about breaking tradition and controlling your own destiny - whatever you want that destiny to be. I can't help but feel a swell of optimism of how this young generation of little girls will grow up with role models like this - head strong, determined, courageous and independent, rather than the majority of princesses we were all brought up idolising - ones who, for them, only desired to find their Prince Charming. And not Princesses who are always pristine, neat and practically perfect in every way, with skin as white as snow, lips as red as roses... no, princesses with wild unruly hair that matches the untameable soul inside - a rugged natural beauty that stems as much from the outside shimmer as it does from an infectious spark within. I didn't need the 3D goggles to gauge how much depth Merida had - a multi-faceted diamond of a lass inside and out (the 'out' thanks to the incredible animators, seriously, wow). Did I mention she was a redhead?! Not blonde, not brunette, a redhead! Yes yes, there was Ariel, but c'mon, her hair was totally dyed. This was ginge. True ginge. I was bursting with pride!

As lovely Merida was big on escaping fate, and controlling her own destiny, I began to realise how far away from my normal self this transplant situation has made me. Normally, (blowing my own trumpet here) i'm quite similar to Merida (yay!) - I believe if you want something to happen you go out and you get the oil and you get those cogs moving, not relying on some external power to decide what will happen for you. But waiting for a transplant is different - you have no other option but to sit and wait. It's a disconcerting feeling of powerlessness. Yet on the other hand, because there is really nothing I can do to control what is happening, I can indulge in this guilty pleasure of pure passivity and let archaic and somewhat alien notions of fate and magic play with my thoughts (in case you haven't realised!). It's a bit of a treat. I'll chill out in this dreamy passive timeless frozen (almost)care-free floating bubble humming 'que sera sera' until my gaudy pink mobile rings and bursts it. Then afterwards back to reality i'll go, fighting fit and ready to shoot fate and destiny down with a well aimed arrow. I'll be so fed up of doing jack shit that i'll probably like, marry a prin... I mean, hunt down a job and a career! No rush though. This is kind of a biggie.

But yes, I want more princesses like her. We need more princesses, heroines, protagonists, role models like her. Pixar, you dun good. And it was funny too. But i'm never going to a PG film at the cinema again. So many crying babies and talking kids and kids eating and kids crying and mums shushing... argh. Kids.

I also want to mention my Podhaler. I've been using it nearly three weeks now, and it's really been quite life-changing. It takes a bit of getting used to because the powder can be really harsh on the back of the throat and makes me cough like crazy. But it's so quick - 5 mins tops, and because it's so speedy speedy, I find I actually take my Tobi much more that I used to. Before, with the neb, I used to sometimes not do it especially if there was no clean nebuliser bits or was in a rush to go somewhere, it just took so much time and effort. But that's not even an issue now, so i've hardly missed a single dose! To avoid the tickle and the coughing I often take a much more gentle breath in, which just means I end up having to take 3 inhalations per capsule rather than two to get all the powder. But that's no biggie.

If you CFers aren't too hot at always taking your nebs, I would recommend asking about and trying to get the podhaler - you might find you're more likely to take your meds more often. I'm always quite compliant with taking my meds, but we all have our off moments where we just can't be bloody arsed. I find I now have less of those, which both my conscience and i'm sure my lungs are very pleased about! I have it on good authority that my lungs are happy, as my lung functions at my 2 weekly hospital appointments (I know, 2 weekly, so lame) continue to get better! That is why I now kick butt, just like my on-screen doppelganger.

Tuesday, 14 August 2012

Clouds and beds and ducks

Have been at my gran's down in Sussex for the last few days, enjoying a mini holiday complete with seaside trip, pub lunches, country high street shopping, chips (lots of food full stop!), and a big fat double bed. I wish I had a double bed. It feels like sleeping on a big cloud where you can sleep in whatever direction you wish and everything you need can be scattered around the outside - books, jelly babies, phone, blue puffer... like some self-sufficient magic platform. Never need to get down. The amount of times I nearly fall of my single bed or have to like, you know, reach all the way down to get something. Honestly.

Tomorrow dad and I are off to Cambridge for a transplant check-up and ultrasound. Gutted that i'm not heading up there for a more exciting reason... oh well. It's an early start, actual early, not my-books-early. I want to be 51kg at least, but my recent eating drought probably won't have helped very much. Time to pile on the bling, Snoop Dog style. (He's hip hop, right? Doggy Dog.)

I now have a funny image of Snoop Dog sipping fortisips...

My spleen is sore. That's the only thing that ails me at this moment in time. But it's always sore. Tender is probably a more accurate way of putting it - it's uncomfy lying on my left side, and it's also uncomfy lying on my right because my ribs dig in and poke the bugger. I would lie flatter to stop the rib poking thing, but if I do I end up coughing blood which is just a nuisance so I prop myself up on this wedge thingy. Just so happens I bend in just the wrong place. I have this hug-a-pillow routine that seems to work, which I suppose also reveals some deep emotional stuff about me. Like a pillow fetish? Maybe it's my subconscious mind clamouring for feather pillows - that luxury that I used to indulge in until those ducks plotted their revenge and conspired against me to make me slightly allergic to their fluffy tufts. Win some, lose some.

But i'll sleep and probably dream of (hugging) David Gandy, mohitos and jetting off to Palau where the two former delights await me. Google image Palau. And David Gandy, why not. Everyone knows what a mohito looks like. Yes, then imagine all three together, and you have some insight into my brain. Golly what an insightful post about Laura's psyche!

Friday, 10 August 2012

A greek mythological feast

I've been slowly working my way through Robert Graves' Greek Myths. I've always loved Ancient Greece, especially the wealth of myths of heros and of gods, of creatures and of origins. But it was this book below that was my Pandora's box, though what was released was not all the world's evils - far from it.

Out jumped this fantastic world full of even more fantastic stories that has captivated me ever since. I read it in year 5 right after we did Ancient Egypt, and completely and utterly fell in love with all things Greek, and ancient. Odysseus became my 10 year old self's crush, even though this book made him out to be more like that equally as cunning and canny Bart Simpson rather than a true Greek Hero of Homer's vein. That was to come. (Pun completely intentional btw!)

In the interim came:

- Disney's Hercules. Just gonna put it out there - best Disney film. Who put glad in gladiator?

- I had this free Disney's Hercules computer game I guess from a cereal box, and messed about on that for years. I remember being chased by Titans on a volcano, and playing draughts with Hades' face on the pieces. High quality shit right there.

- Troy. Had the biggest crush on Orlando Bloom, though he was a horrific Paris and couldn't act to save his life. And HI BRAD.

Ancient Greece was a big love of the Romantic poets, so I was surrounded doing A-level English lit by poems and poems about all the myths I had grown to love. I'm not sure whether I came to love the Romantics because they wrote about Ancient Greece or the fact that the Romantics wrote about it made me love the myths even more... or whether all these loves of mine collided and hence exploded into some fanatic sized obsession that seems to just keep growing. Because add into the mix my love of pre-raphaelite art and we have some serious Big Bang expanding universe thing going on here. But first here's some links to some poems I absolutely adore. Click on them and read them, you won't be disappointed.

This is Ulysses by Tennysson. It is set when Ulysses (or Odysseus) is an old man, as he reflects on his life. From when I first met Odysseus as a little boy in Tony Robinson's book, to these last days of his life as seen by Tennyson, this poem, I think, captures wholeheartedly that infectious and vibrant spark Odysseus has always had, as he is saying even if time and fate have weakened me, my mind and my 'heroic heart' will never tire and never yield. I love you Odysseus! I want to be like you!

This poem is also by Tennyson and is called Tithonus. Tithonus was granted immortality so he could be with his lover Eos, goddess of the dawn, yet he was not granted immortal youth so he endlessly ages. In the poem he watches Eos as she rises and sets everyday, un-aging and forever beautiful, whilst he withers and crumbles - a 'grey shadow' of a man. My heart aches in sympathy - it's so so sad yet so so beautiful. "Why should a man desire in any way to vary from the kindly race of man?" I read this, and I realise: not me.

Keats' Ode on a Grecian Urn raises questions on immortality, mortality, art - quite similar to Yeats' poem in this blog post. I love the moment about the two lovers on the urn about to kiss but never able to - 'winning near the goal' - but they shouldn't be sad because 'forever wilt thou love and she be fair!'. As my english teacher said, they never have to experience 'all the annoying parts about dating and kissing and sex, like getting all sweaty'. It was a very cringe moment.

Finally, another one by Tennyson. Yeah, he was a bit obsessed, but damn good at it all so much forgiven! This is called The Lotos-Eaters, as is about when Odysseus and his men stopped at an island inhabited by 'lotus eaters'. The lotus fruit the men are fed is a bit like some of those Chelsea and West sedatives - makes you sleepy, happy, and forget about everything. This will sound a bit school-ish but I think is fascinating and oh-so clever: as the poem goes on the structure, rhythm and rhyme changes, and ends up in a lulling 'choric song' (that even has to be numbered, bless) as the men slip into a unified lazy slumbery druggy chant; very different to the beginning where "COURAGE!" alongside strength and determination is practically shoved down your throat like some over-ambitious American 'hockey mom'. Don't take drugs, kids. (Unless you have Odysseus to drag you away from 'bad influences'.)

A few summers ago I went to the Waterhouse exhibition at the Royal Academy - I made mum book tickets as soon as I heard it was coming because I knew I would never forgive myself if I missed it! Waterhouse, as well as taking inspiration from the poems of my favourite poets such as Keats, also painted mythical scenes, and oh my jeeez, I've never been so awe-struck walking round an exhibition. Sounds silly, but I really was. Painting after painting was a perfect, beautiful representation of Homer's tales, so completely epic yet delicate at the same time. It's like he had captured the magical, intangible quality of myths and folklore, yet had given them all the gravitas, solidity and grandeur that myths inherently possess. So here are some pics, not just by Waterhouse, inspired by greek mythology. I like it when you find two different interpretations of a myth or a poem, just to see how different painters approach the subject.

'Circe' Wright Baker

'Ulysses and the Sirens' Herbert Draper

'The Siren' John William Waterhouse

'Ulysses and the Sirens' John William Waterhouse

'Circe offering the cup to Ulysses' John William Waterhouse
'Circe Invidiosa' John William Waterhouse (This is also my bookmark!)

Doing a little more reading earlier, I was drawn to the section about The Fates. Now as i'm not religious and so don't really want to pray to god or anything regarding transplants-hurrying-the-fuck-up, I decided I could try turning to the Fates. The Fates, or the Moreae, are comprised of Clotho (the spinner), Lachesis (the measurer), and Atropos (the cutter), with Atropos being the most deadly as she is the one who decides when your thread of life is to be chopped! Apparently, not even Zeus is immune from the Fates' devious fingers. But I can't really ask for lovely Atropos to cut someone else's golden thread thanks dear, that's just sick. It's not my life they're contemplating just yet...

Then there's also Tyche and Nemesis - Tyche is the holder and therefore provider of luck and fortune, but who deals out this good fortune in a haphazard manner. I'm a fan of this sense of equality and fairness in receiving good fortune - if only religions were as blind. Nemesis means 'to give what is due', and therefore if the beholder of Tyche's luck does something to render this luck undeserved, Nemesis makes sure that person receives some form of divine retribution or punishment. So here's me hoping Tyche's spinning ball lands on my number soon, and that Nemesis thinks i've been an allright kinda gal and doesn't inflict rejection or an un-shrinking spleen or any nasty transplant complications upon me! After all, what had Prometheus also put inside Pandora's box on the off-chance that it would be opened? Hope. And that's what I got baby!

'Justice & Divine Vengeance Pursuing Crime', by Pierre Paul Prud'hon

I hope this has been interesting, or at least re-ignited your love of Disney's Hercules. I now have all the songs stuck in my head... damn it! ("And then along came ZEUS")

("Zero to hero, just like that!")

Wednesday, 8 August 2012

Amaretto Marshmallow

Endoscopy was completely fine. Camera in, camera out. No banding needed, and the angry inferno left in the wake of the previous one had (from what I can recollect thanks to the sedatives' amnesiac properties) all settled into a much more tranquil and heavenly looking place. If oesophegus' can ever look that pretty. Ha.

What I didn't know is that you can be given a sedative reversal drug, meaning that walking out of Chelsea and Westminster I looked pretty normal, as supposed to a looking like a crack-head somnambulist. Still a little sleepy, and gosh I hate to think what my hair looked like (these days it's shocking at the best of times. Bloody vitamin deficiencies making it go all thin!). Despite this, I felt well up to making the most of this beautiful sunny day! Caramel coffee frapaccino in hand me and mummy hit Kensington High street with the sole intention of finding trousers. I have ONE pair of trousers I wear. The only ones that do up. And they're not that nice to be honest. I'm now the proud owner of two more that shock horror actually do up! Still a little baggy because my legs are stupidly skinny, but it's progress. And they're not black. I brought maroon jeans, and cream jeans with pink flowers on which I absolutely love. And two baggy tops. Blue and maroon (again). Yeah I like maroon. Thank you H&M!

Of course I also treated myself to TWO(!) mascaras and eye liner and two nail polishes (amaretto and marshmallow) and body spray and cotton buds. Yay cotton buds.

My jeans!

My marshmallow nails, with added doodle

And now i'm going to go to bed because I woke up a full 6 hours before what I deem a suitable time to get up. (Anytime after 1. Tough life. ) And i'm shattered!

Next endoscopy appointment: 6 MONTHS FTW!

Tuesday, 7 August 2012

Jaws without the shark

Wahey guess what treat lays instore for me tomorrow? I'll give you a clue: it involves cameras, drugs, and bang on trend clothing.

Naah don't be silly it isn't a super cool Abercrombie model party in the sparkly sordid depths of a Mayfair club, it's an endoscopy! Duh! (Oh i've missed that sexy hospital gown.)

It feels like i've only just recovered from the one two weeks ago, and I SWEAR, if this one stops me from consuming any more delicious KFC chicken shaped calories, i'm not going to be a happy chick (lols, see what I did there?). As tasty as tomato soup with whizzed-in hot dogs sound, it wasn't really that enjoyable. Funny that. And my GP has been ridiculously incompetent in ordering me the high calorie milkshake supplaments (they're just a bit floppy in ordering any of my meds - one tub of creon and one blue inhaler for a two month supply? Deekheads) so i'd rather not have to rely on their haphazard attempts at DOING THEIR JOB to avoid starvation and malnutrition. (I know I can buy milkshakes. But I like free stuff.)

I'm hoping there won't be too many more of these tedious procedures - I don't want to jinx anything, or get too optimistic given the completely unpredictable nature of transplants, but i've now been waiting 3 1/2 months, and I was told the average wait for me would be about 3 to 4 months. It's quite a short waiting time due to me needing multiple 'bits', and being on the national register. Though liver waiting times are significantly less than lungs, for example. Every time I have something done such as an endoscopy or vitamin injections, even when i'm doing my insulin or taking enzymes at dinner, at the back of my mind I always wonder if, (and secretly wish that) this'll be the last time. Normally I try not to have those thoughts because it's a sure way of preventing my phone from ringing, hence the 'secretly'! And then I get all schizo and pretend to myself I didn't think that... when I did. And I know I did.

The other things I wonder:

- Will I get my call before Big Brother finishes?
- Will I get my call before I finish my book?
- Will I get my call before the Olympic closing ceremony?
- Will I get my call before Carnival?
-...before my mum's b'day (sept 7th)
-...before my bro (Sam) goes to Uni?
-...before we finish the bathroom?
-...before I go to see the Paralympics? (I know!)
-...before I ever get round to tidying my room?
(These ones, minus the last, I want my call to come after!)

This is a bit of an aside, but I feel like putting these quotes in because they're hilarious. From this article about the writer Will Self.

The coffee pot boils, no doubt in a deliberate attempt to impose dull, naturalistic order on the contemplation of what it means to exist. Self unfurls himself from his ergonomic computer stool and gingerly removes the pot from the stove using a grubby towel.

"I always start with physicality when I'm writing as a woman. So I always have a vagina and think about having periods. I always start with an embodiment. And I think when I read men writing about women, they never seem to have thought about that. They've never thought: actually, you've got a cycle, you're different. So if I do succeed at all, that's what it's down to."

He is already beavering away at his next novel, the working rubric for which is, he tells me, "Jaws without the shark".